Fall & Winter 2013
Celebrating our TOP WALKER IN CANADA, Margot Greenberg (centre), who raised more than $72,000!
This Issue....
SuperWalk 2013
Parkinson Buddies
WPC 2013
When You’re in Trouble with Urine Troubles
Who’s Going to Walk the Dog?
Around the Region
Parkinson Society Central & Northern Ontario 2013 SuperWalk Raises More Than $950,000! Parkinson Society Central & Northern Ontario is proud to celebrate another successful SuperWalk with more than 3,100 participants, 500 volunteers, and 30 walk locations! Our walkers raised more than $950,000 to help us realize our vision of a better life and a brighter future for Canadians living with Parkinson’s today—and a world without Parkinson’s tomorrow.
Parkinson Society Central & Northern Ontario Who We Are
Welcome to LiveWire, our regional newsletter! So many exciting things have been happening in our region, and we hope you enjoy this issue of the newsletter where you get to ‘read all about it.’
PSCNO ADVISORY BOARD
Many of us throughout the region were privileged to be able to attend World Parkinson Congress from October 1–4 in Montreal. Three thousand, three hundred, and thirty people from all over the world attended— about 1,300 from Canada—and we were all proud to wear the Canadian ribbon identifier. Don’t forget to read about the Buddies Program in this issue of LiveWire, as PSCNO’s Bill Sloan was the volunteer who organized the program. Parkinson SuperWalk 2013 has been a great success this year. I am happy to announce that we have raised $950,000 so far, our highest total yet. We are grateful for the support of the many volunteers, sponsors, walkers, and donors who make this possible. Our goal is to make Parkinson Society Central & Northern Ontario the first choice for Ontarians seeking Parkinson’s disease information, support services, and leading-edge research. Please help us in our efforts by spreading the word that we are here for Ontarians online, in person, and on the telephone, guiding them along their Parkinson’s journey. Ask anyone with Parkinson’s what keeps them going, and they will say, understanding today and hope for the future; what they want most, they will tell you, is a cure. Together, we can achieve this, with your continued support.
John Parkhurst Sherri Brand Rebecca Hogan AB Rustin Dr. Gordon Hardacre Stephanie Bruder Kate Pitfield Larissa Ruderman Jackie Ruderman
Chair Vice Chair Treasurer Member at Large Member at Large Member at Large Member at Large Member at Large Member at Large
STAFF Debbie Davis, Chief Executive Officer 416-227-3373 /800-565-3000 ext. 3373
debbie.davis@parkinson.ca
Naseem Jamal, Community Development Coordinator Toronto 416-227-3377 /800-565-3000 ext. 3377 naseem.jamal@parkinson.ca Diane Newman Reed, Community Development Coordinator East 800-565-3000 ext. 3315 diane.newmanreed@parkinson.ca Karen Dowell, Community Development Coordinator West 800-565-3000 ext. 3376 karen.dowell@parkinson.ca Karen Boyer, Community Development Coordinator North 705-645-9513/800-565-3000 ext 3317 karen.boyer@parkinson.ca Amanda Stanton, Community Development Coordinator Central 416-227-3371/800-565-3000 ext. 3371 amanda.stanton@parkinson.ca
Enjoy reading this issue of LiveWire!
Louise LeBlanc, Coordinator of Volunteers, Toronto 416-227-1200/800-565-3000 ext. 3304 louise.leblanc@parkinson.ca
What We Do
Sandie Jones, RN, Coordinator, Client Services and Education 416-227-3375 800-565-3000 ext. 3375 sandie.jones@parkinson.ca
Support Services We provide consistent and excellent support to people living with Parkinson's and their families to make their lives better.
Robert TerSteege, Information & Referral Associate 416-227-3372/800-565-3000 ext. 3372 robert.tersteege@parkinson.ca
Education Our goal is to provide excellent seminars and conferences to different areas in the region and online so that this information is readily available. We also offer smaller sessions during support group meetings all over the region.
Zuzana Markovic, Information & Referral Assistant 416-227-1200/800-565-3000 ext. 3474 zuzana.markovic@parkinson.ca
Advocacy Our Ontario-wide Advocacy Committee works to influence the behaviour of key government officials and agencies in support of people living with Parkinson's, and build strong relationships with the Local Health Integration Networks across Ontario.
Lorelei Wilkinson, Manager, Major and Planned Giving 416-227-3378/800-565-3000 ext. 3378 lorelei.wilkinson@parkinson.ca
Research Parkinson Society Central & Northern Ontario fully supports the National Research program and sends all research donations to support this program.
Jon Collins, Manager, Programs and Events 416-227-3370/800-565-3000 ext. 3370 jon.collins@parkinson.ca
PSCNO could not fulfill its mission without the generosity of its donors and volunteers! To help ease the burden and find a cure, call 800-565-3000 ext. 3378 or visit www.parkinsoncno.ca to make a one-time or monthly donation. Thank you for your continued support!
LiveWire
Stella Recchiuti, Office Manager 416-227-1200/800-565-3000 ext. 3301
stella.recchiuti@parkinson.ca
Kim Murdoch, SuperWalk and Event Coordinator 416-227-3374/800-565-3000 ext. 3374 kim.murdoch@parkinson.ca
Alineh Haidery, Communications Coordinator, Ontario 800-565-3000 ext. 3318 alineh.haidery@parkinson.ca
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Fall & Winter 2013
SuperWalk 2013 Celebrating A Successful SuperWalk in Central & Northern Ontario! Around our Central & Northern Ontario (CNO) region, there are many stories of success from SuperWalk. Here are a few:
We are proud to announce that the TOP WALKER in Canada is from CNO! Congratulations to Margot Greenberg who raised over $72,000! Margot has been an avid supporter of SuperWalk since 1994.
There are three CNO teams still ‘duking it out’ for TOP TEAM in both the region and across Canada. Hughie's Hustlers, Mississauga Warriors, and Team Bearg continue to impress us with their colossal fundraising success!
In 2013, SuperWalk welcomed new walk locations in Vaughan and Northumberland, and both had amazing first-year success! With a combined total of nearly $100,000, these locations hit the ground running and are off to an amazing start!
2013 marked the third annual SuperWalk Long Term Care Challenge. Retirement Residences and Long Term Care Facilities across CNO hosted fundraising events in their homes to help support SuperWalk in their community—from mini walks to BBQs, tea parties to wine and cheese socials, and more! The Community of Lookout Ridge in Fonthill is our 2013 Challenge winner, raising more than $1,600 for the Niagara SuperWalk!
Our small but mighty Support Group Walks were an integral part of CNO’s success this year. Thank you to all the loyal Support Group friends and family who came out to support SuperWalk 2013! SuperWalk could not have happened without the help of our fantastic walk committees, walkers, participants, teams, media supporters, volunteers, and sponsors. Many of these individuals gave their time freely to ensure that SuperWalk was a tremendous success, and we sincerely thank them for all of their hard work and commitment to this remarkable event.
Remember to visit www.parkinsonsuperwalk.ca in early April 2014 to register for a SuperWalk in your community. SuperWalks across CNO raised a record-breaking $950,120, and we are setting our sights on the $1 million mark for 2014! We hope you will join us as we aim for this monumental goal! LiveWire
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Fall & Winter 2013
SuperWalk 2013 Walk Totals
Top Walkers
Top Teams
Alliston………..........…………..$3,543
Alliston........................Robert Nicholls
Alliston...............................Joe’s Girls
Barrie………..……….....…….$25,611
Barrie...........................Tim Snelgrove
Barrie..............................Nancy Pants
Belleville....…...…......…….....$12,603
Belleville........................Robert Ritzer
Bracebridge..…....…………...$21,254
Bracebridge.................Tammy Taylor
Brampton…….....……...……..$20,743
Brampton........................Alan Farmer
Burlington........................Mo’s Angels
Burlington………….…....……$83,962
Burlington....Allison Neilson-Jessome
Collingwood...........Desnoyers Family
Collingwood…………......……..$1,800
Collingwood...................Janet Rosine
Durham Region ............Bertha’s Tulip
Durham Region……..............$82,090
Durham Region...............Leslee Wills
Guelph.........................................Q.T.
Guelph…………………....…..$26,507
Guelph..................................Mary Joy
Hamilton.................Marriott Marchers
Haliburton……………….......…$1,674
Haliburton......................Zelda Cooper
Hamilton……………...............$22,436
Hamilton........................Anna Sbrissa
Huntsville………………......…..$4,960
Huntsville.................Pauline Diamond
Manitoulin Island.............Marky Parky
Kingston……………...............$26,136
Kingston...........................Lidia Binnie
Kirkland Lake…………........….$3,166
Kirkland Lake.................Diane Merrell
Markham/Unionville..............Grandpa Conrad’s Team
Manitoulin Island……….......…$1,870
Manitoulin Islands........Marion Turner
Markham/Unionville…......……$6,946
Markham..................Victoria Janovski
Mississauga……………..…...$51,190
Mississauga..................Jim Wilkinson
Newmarket/Aurora……....…..$26,551
Newmarket/Aurora....David Gallagher
Niagara…………………...…..$27,511
Niagara............................Diane Dunk
Peterborough................Peterborough Movers & Shakers
North Bay……………….......….$1,505
North Bay.......................Ron Boucher
Sault Ste. Marie..............Roes Family
Northumberland………......….$53,485
Northumberland .......William Gardner
Orillia…………………..........……$585
Orillia..............................Doreen Kelly
Parry Sound…………..........……$712
Parry Sound................Carol Marshall/ Belvedere Heights
Belleville......................Bushy’s Bunch Bracebridge..............Johnny’s Angels Brampton.....................Farmer Family
Huntsville........................Huntsvillians Kingston..........The Walking Runnings Kirkland Lake....John & Diane Merrell
Mississauga......Mississauga Warriors Newmarket/Aurora.......................Irish Niagara...................Sullivan Mahoney Slam Dunk Parkinson Northumberland.................Team Billy
Sudbury ...................Bernice Leblond Thunder Bay................The HAM Clan Timmins........Timmins Support Group
Peterborough………….....…..$37,102 Sault Ste. Marie…….......……..$1,665 Sudbury………………......…..$19,679 Thunder Bay…………......…..$13,228 Timmins………………........…..$2,975 Toronto……....………………$322,569 Vaughan………………….......$46,064
Peterborough...........Vivian Heinmiller Sault Ste. Marie...........Evelyn Horner Sudbury...................Bruce McCulloch Thunder Bay...................Dan Balacko Timmins.......................Mariette Rains Toronto..................Margot Greenberg Vaughan...........................John Scaini
Total LiveWire
$950,122 Page 4
Toronto...................Hughie’s Hustlers Vaughan........................Team Cookie We are always looking to expand our horizons and include additional walk sites in our fundraising campaign. If you would like to take on the exciting challenge of bringing SuperWalk into your community, please contact Amanda Stanton at 800-565-3000 ext. 3371, or amanda.stanton@parkinson.ca
Fall & Winter 2013
SuperWalk 2013 Parkinson SuperWalk Long Term Care Challenge We are proud to announce that the winner of this year’s challenge is LOOKOUT RIDGE in Fonthill. More than $1,600 was collected from the residents in the home and was contributed to the Niagara SuperWalk. We would like the thank all of the following homes who supported SuperWalk and participated in the challenge: APPLEFEST LODGE, Brighton CAVENDISH MANOR RETIREMENT RESIDENCE, Niagara Falls EXTENDICARE KINGSTON, Kingston HELEN HENDERSON CARE CENTRE LODGE, Amherstview TRILLIUM CENTRE, Kingston THE VILLAGE OF HUMBER HEIGHTS, Toronto BELVEDERE HEIGHTS LONG TERM CARE, Parry Sound RIDEAUCREST HOME, Kingston THE GARDENS OF PETERBOROUGH: PRINCESS, ROYAL, EMPRESS, AND CANTERBURY, Peterborough BAY HAVEN SENIOR CARE COMMUNITY, Collingwood SIMCOE TERRACE, Bracebridge Thanks to our food sponsor, Subway Restaurants, for providing 10 of our walk sites with 6-inch subs for our participants!
Parkinson Society Central & Northern Ontario would like to thank all of our generous SuperWalk sponsors who helped bring us closer to a cure! Gold
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Silver
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Bronze
Fall & Winter 2013
Parkinson Buddies World Parkinson Congress 2013 Buddies What makes a ‘buddy’? The definition is ‘a close friend’ or pal, chum, mate, fellow, comrade, or companion. The World Parkinson Congress (WPC) Buddy Program linked people from the host country of Canada with others around the world who are living with, or affected by, Parkinson’s. In some cases, Canadians were ‘buddied’ with others from different regions or provinces. Marg and Don Turner, and John and Sue Whipps were part of the Buddy Program at World Parkinson Congress (WPC) 2013 in Montreal. The Turners and the Whipps enjoyed exchanging emails in the months preceding the WPC, and met in Montreal. There they dined together and, over the week, Ontarians Marg and Don Turner made sure to introduce the Whipps to the many friends and associates they have made over the past 19 years since Marg’s Parkinson’s diagnosis. In addition, many new associations were made with fellow Canadians from Saskatoon, Regina, and Abbotsford, to name a few. At the WPC, the Turners participated in a flash mob song, as part of an international Parkinson’s choir ‘Voices of Hope.’ John and Sue came to WPC from Looe, Cornwall, United Kingdom, where they moved to a seaside home in 2009, several years after John’s retirement. They found the Buddy Program very valuable. “Our buddies made us feel at home in Canada and through them we met so many other wonderful people who were not letting Parkinson’s rule their lives.” Both couples found they had much in common to talk about. John was a university professor and Sue a teacher in a primary school; Don worked in the transportation industry for years at CP Rail and Marg, who ended her working career as an office administrator at the same time as Don’s retirement, has since worked passionately on various community projects, and on building awareness of Parkinson’s disease through the local media. Both Sue and John are very active participants, and on the executive, of their Young Onset Parkinson Groups. Here in Ontario, the Turners have become fondly known as ‘Team Turner’ for their boundless energy and commitment to a wide variety of PSCNO events, which include leading the North York Support Group for close to 10 years; organizing high-profile long distance walks as part of Parkinson SuperWalk; being members of the Hope In Bloom Tulip Campaign Committee; and working as ambassadors in various settings. They are known for asking “What can I do to help?” and following through with great commitment and zeal. Marg and Don are also long-time supporters of PSCNO’s monthly giving program ‘Partners for Parkinson’s.’ “We were invited to become monthly supporters by another member who invited us to give, mentioning that it was the price of a cup of coffee a day to make a difference.” To become a monthly supporter, contact Lorelei Wilkinson at 800 565 3000 ext. 3378 or email lorelei.wilkinson@parkinson.ca. If you are interested in becoming a buddy, effective January 2014, you can contact Bill at bill.sloan@parkinson.ca or Barry at barry.shorrocks@parkinson.ca. LiveWire
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New Buddy Program Coming to PSCNO The World Parkinson Coalition and Parkinson Society Canada launched a Buddies program in preparation for the 2013 Congress, matching registrants from around the world with a Canadian Buddy to share their experiences living with Parkinson’s. The Buddies Program had 206 participants, including people living with Parkinson’s, carepartners, or couples. The volunteer responsible for the success of this program is Bill Sloan who, in October 2012, became the volunteer responsible for matching people as buddies. He volunteered up to 25 hours per week ensuring good matches between people at similar places in their PD journey and with similar interests. Feedback to-date has been positive: “I like the way we were very carefully matched in terms of our PD as well as our other life experiences.” “There is a sense of community that lightens the burden when we have an opportunity to share strategies, concerns, and challenges.” “For Bill Sloan, this was a very important volunteer role. His personal dedication, and his own journey with PD (which has been quite difficult at times), made him very committed to matching buddies in so many ways other than just their Parkinson’s journey,” says Louise LeBlanc, PSCNO coordinator of volunteers. Bill has been an active volunteer with PSCNO since 2006 as a ‘Hope in Bloom’ Tulip Captain and a Healthpartners speaker. In January 2014, PSCNO is starting its own Buddy Program. We will have two volunteers: Bill will be the volunteer who matches people living with PD, and Barry Shorrocks, who is the primary carepartner for his wife, Ann, will match carepartners. Not everyone is comfortable speaking at support groups, and not everyone has easy access to a support group. The Buddy Program will offer an opportunity for people to be matched with others who understand the day to day issues they face, and who can offer friendship and support.
Fall & Winter 2013
WPC 2013 World Parkinson Congress 2013: Four Days of Sharing Information, Demonstrating Progress, and Inspiring Hope As the third World Parkinson Congress (WPC) came to tips and experiences, engage with the international Parkinan end, many left with a message of hope for the Parkin- son’s community, and foster another layer of support. son’s community—hope for a better quality of life, betMore than 100 people from various countries came to the ter treatments, and one day a cure. reception, organized by Parkinson Society Central & NorthThe four-day conference, hosted in Montreal, shared inforern Ontario’s volunteer Bill Sloan, who has Parkinson’s. mation about advancements in science, and promoted an international sense of community, by bringing together thou- “I came up with the idea of having the Buddies’ reception so sands of people from across the globe, including scientists, that the buddies could meet for the first time,” says Sloan. “I thought it would be an excellent way to show appreciation to neurologists, advocates, caregivers, and people living with Parkinson’s disease. Presenters came from many countries the individuals and caregivers for participating in the first international buddy program.” such as Australia, France, Netherlands, the U.S., and our very own Canada. The conference offered a large spectrum of sessions encapsulating a variety of topics. These included the following:
why and how specific neurons die in Parkinson’s disease and what can be done about it
why supporting research is crucial: from government to private funding agencies
non-motor manifestations of Parkinson’s disease
the search for new delivery methods for drugs
new views on the management of Parkinson’s disease
Bill Sloan and Debbie Davis at WPC As well, Parkinson Society Canada hosted the 10th Donald Calne Lecture, where Dr. Virginia M.-Y. Lee presented on ‘New insights into the mechanisms of Parkinson's disease progression.’
Dr. Lee is a professor at the University Of Pennsylvania School of Medicine and is internationally recognized for her work on the etiology and pathogenesis of alpha-synuclein, tau, TDP-43, and other misfolded disease proteins in the “What a great few days to learn about the latest developments in Parkinson’s research and directly interact with the pathobiology of neurodegenerative diseases, including Alzheimer’s disease and Parkinson’s disease. Other research Parkinson’s community from different parts of the world,” says Debbie Davis, Chief Executive Officer, Parkinson Soci- efforts focus on an increased understanding of the collaborative initiatives to advance drug discovery in Alzheimer’s ety Central & Northern Ontario. “It has left us feeling more and Parkinson’s diseases. encouraged and hopeful than ever.”
which physical and mental exercises are good for people with Parkinson’s
Parkinson Society Canada also hosted the first ever Buddies’ Reception at the conference highlighting the Parkinson’s Buddies Program. WPC organizers launched the Buddies Program, matching registrants with Parkinson's or caregivers with others from around the world who were also attending. This program was initiated to encourage buddies to communicate before, during, and after WPC to share their LiveWire
World Parkinson Congress is the only global meeting to include all members of the Parkinson’s community. Webcasts for selected sessions, including the Opening Ceremony on October 1, are now available through their website, www.worldpdcongress.org. The next conference will be in 2016 in Portland, Oregon.
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Fall & Winter 2013
The Nurse’s Desk When You’re in Trouble with Urine Troubles (or When You Can’t Go with the Flow) For many years, the focus of Parkinson’s disease treatment and management was centred on the problems with movement such as tremor, muscle stiffness, and slowness of movement. Recently the realization that Parkinson’s is not limited to only impairment of movement has changed the focus, and numerous other clinical features are now being examined—features that, in fact, have nothing to do with movement and as a result, do not respond to levodopa therapy. Among these ‘non-motor’ features are disturbances within the autonomic nervous system, the system I prefer to call the ‘automatic’ nervous system, because it controls things like our heart rate, blood pressure, sweating, sexual function, as well as gastrointestinal and urinary function—things that for those of us without Parkinson’s usually take for granted because they are being controlled automatically, and we don’t need to worry about them. Urinary difficulties are common and distressing for those who experience these problems. The bladder is a muscle which gradually expands as urine collects. At the opening, a muscle called the sphincter is usually closed except during urination. Both the bladder and the sphincter muscles are controlled by the brain. When one to two cups of urine has collected in the bladder, the bladder starts to have small contractions that signal the brain that the bladder is filling up. Usually, the brain can suppress the contractions and signals until the individual can get to the bathroom, at which point the brain lets the bladder contract, the sphincter relaxes, and normal urination takes place in the toilet.
Speak to your doctor if you are experiencing any of the above symptoms, as there are medications that can help to relax the bladder muscle and reduce bladder over-activity. Difficulty eliminating urine, or fully emptying the bladder, is another common problem. It can be caused by a sphincter that wants to close when the bladder is ready to empty or it may be a result of the fact that the bladder muscle is too weak to expel urine. The symptoms of difficulty eliminating are the following:
Frequency: the need to urinate happens extremely frequently
Incontinence: involuntary loss of urine
weak urinary stream
dribbling or leaking
feeling that the bladder has not completely emptied
A referral to a urologist may be necessary in order to determine the cause of the problems and decide if they are related to your PD or to something else. In summary, please speak to your doctor if you are experiencing the following:
Difficulty holding urine is the most common problem. The bladder becomes overactive and irritable and wants to empty even if there is just a small amount of urine present, which results in the following: Urgency: difficulty delaying urination once the need is perceived
The biggest concern with these symptoms is that incomplete bladder emptying can cause accumulation of urine and the growth of bacteria. This results in a urinary tract infection, which can happen in both men and women. While pain and changes in color or smell can be symptoms of a urinary tract infection, sometimes there may be no symptoms. However, having an infection can cause problems with levodopa, and a person can appear to have suddenly worsened with PD symptoms.
With all this talk about signals and messages travelling between the brain and muscles, I am sure by now you can see where I am going with all this, as we know in Parkinson’s that the communication between the brain and many muscles is disrupted.
Nocturia: repeated need to get up at night to urinate
leakage of urine significant enough to cause embarrassment
inability to urinate when bladder is full
unusually frequent urination without a proven bladder infection
needing to rush to the bathroom or losing urine if you don’t arrive in time
pain related to urination
feeling that the bladder is not emptying completely or weakness of the urinary stream
There are medications to treat urinary frequency and urgency, but before initiating these, a doctor must make sure that some unrelated process, such as enlarged prostate, is not responsible for the problem. By Sandie Jones, RN
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Fall & Winter 2013
Information & Referral Who’s Going to Walk the Dog?
Alternative Living Arrangements Consider Retirement Homes
I've spent half of my life thus far living in the country and half in the city, and more time living with people than living alone. I’ve lived alone in a lightless basement apartment, and I’ve shared a penthouse, which had closets bigger than some other units I’ve lived in. As long as there is room for me and The Beasts—one tiny dog and one giant cat—I’m okay.
If you are looking for: Your own room or apartment near other people who have similar lifestyles and social interests Wheelchair-accessible rental accommodations Other optional services (e.g., meals or social activities) A setting that can adapt to changes in your personal care needs
More seriously, as someone with my own disability issues and no family in the city, one of my greatest priorities in where I live is to be close to friends who can be imposed upon. While that might sound selfish at first, if you are having a day when you aren’t mobile and a stomach bug hits, and you discover you are out of anti-diarrhea medication, how are you going to go out and get it? And who’s going to walk the dog?
If you don't need: Government-subsidized rent or care 24-hour availability of nursing care or specialized health services Consider Assistive Living Services in Supportive Housing If you are looking for:
My next concern is where is the doctor’s office? When I was a child, my parents would have to drive me to the next town over, about 20 minutes away. When they retired, they had to have the same doctor, which was now 83-km-drive (an hour) away. Like many places, there was no doctor accepting new patients. I have a friend in Toronto who also has a doctor in Toronto, but at a distance of 14.8 km away (or an hour away) provided the two trains and one bus make their exchanges on time. Being in the city doesn’t guarantee better access to service; however, when you aren’t moving well and can’t leave the bathroom, it doesn’t matter if you have the drug store across the street or in the next town over. The problem is getting the medication. And the dog is starting to scratch the door. If I didn’t have friends to impose upon, what would I do? Because I have worked in the human services sector for so long, I know what’s available through ‘the System.’ Most people don’t, and most people do not know the difference in the terms used. The differences are important: that grey ball of blur on my lap in the picture is in the same species as a Great Dane and a wolf, yet all three are distinctly different and would need to be treated quite differently, despite certain commonalities. The same goes for alternative living arrangements, once living safely in your home cannot be done any longer. Before making certain decisions, it is important to know some of the key differences. Because sooner or later, the dog is not going to wait for someone to come and walk her. By Robert TerSteege, CIRS-CAN LiveWire
Your own apartment near other people who have similar lifestyles and/or social interests Rental housing with possible government rent-geared-toincome subsidy Government-funded personal care services 24-hour availability of personal care and support Other optional services (e.g. meals or social activities) If you don't need: Immediate or 24-hour availability of nursing care or specialized health services Consider Long-Term Care Homes If you are looking for: Residential accommodation and care for individuals 18 years of age and older Assistance with activities of daily living and/or 24-hour availability of nursing care and high levels of personal care A setting that can accommodate varying health needs with on-site supervision for your personal safety Government-funded nursing and personal care Possibility of subsidized accommodations If you don't need: 24-hour hospital care Source: Home, Community and Residential Care Services for Seniors, October 2013, http://www.health.gov.on.ca/en/public/programs/ ltc/12_residential_mn.aspx
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Fall & Winter 2013
Around the Region Pedaling for Parkinson’s raises more than $100,000! What began three years ago as a bright idea in the minds of two friends with a love of cycling, and each with their own personal connection to Parkinson’s disease, has grown into Parkinson Society CNO’s largest annual third-party event. This year, the ride raised in excess of $100,000—funds that will go directly to support the National Research Program through the Pedaling for Parkinson’s grant. In 2011, local residents Peter Istvan and David Newall co-founded Pedaling for Parkinson’s to raise awareness and research funds for our organization. In year one, they exceeded expectations, raising over $18,000. In 2012, over $54,000 was raised. For 2013, the goal was set at an ambitious $75,000, and with a few dollars still trickling in, the total amount raised is over $100,000.
“This event helps make a difference in the lives of people and families affected by Parkinson’s,” says Istvan. “There are so many inspirational stories that motivate people to ride. For example, one cyclist who participated was riding in honour of his grandmother who died 20 years ago of Parkinson’s.” Another heart-warming tale, and one which has been covered by numerous media outlets this summer, is that of Nat Bannister, a nine-year-old Nobleton resident who tackled the ride, traveling over 280 km through three days with his father in support of his grandfather who is living with Parkinson’s. Nat’s completion of the ride was heroic—as was his fundraising total, a whopping $10,000. Nat spends a lot of time with his grandfather and was enthusiastic about participating and help-
In what is great news for Parkinson CNO, the research community, and everyone who participated—along with those who would like to get away to Parry Sound in 2014 for a wonderful weekend of sightseeing, camaraderie, and cycling—the event is already scheduled for next year, set to take place July 11–13. The details will be available soon at www.pedalingforparkinsons.ca.
Parkinson’s are greatly appreciated, and whose candor always makes for an enjoyable event.
Other Events Around the Region Pitch in! for Parkinson’s was another great success this year. Our game-day experience sold out quickly, with a busload from Peterborough joining an already large group of Blue Jays fans at the Rogers Centre as the team took on the Oakland Athletics. Best of all, for the first time in recent memory, our crowd was treated to a win by the home team!
We have had a number of successful Third-Party Event fundraisers this year, including two events very different in nature—but both committed to the cause. Thanks to Lynette Blum for organizing ‘Yoga for Parkinson’s’ for the second consecutive year. The event raised $2,000 and achieved its goal of contributing funds, but also raising awareness about the role that yoga, and exercise, can play in the effective management of Parkinson’s; something about which Lynette’s father, Joachim, is acutely aware.
Additionally, this year marked the second time friend of the Society (and Rogers Sportsnet Analyst), Gregg Zaun, hosted the Pitch In! dinner and silent auction. Forty participants gathered for an intimate event at Michaels on Simcoe featuring great food, entertainment, and answers to all the questions you can think of about baseball, including how Zaun really feels about co-host Dirk Hayhurst and Blue Jays Catcher JP Arencibia. A special thanks to all who attended, and to Mr. Zaun, whose commitment to raising funds and awareness for
LiveWire
ing to find a cure for Parkinson’s. When Nat’s father, Doug, found out about the ride and suggested it to his son, Nat took no time to reply, “Is that even a question?” From there, dedication carried the duo to achieving both their distance and fundraising goals.
From relaxation to extreme endurance, 65 year-old Toronto resident John Versteeg engaged in an Ultra Marathon race. The six-day event, entitled Desert RATS for Race Across the Sand, covered 148 miles and spanned two states. Along the way, John raised an impressive $3,500. We are grateful for our event organizers who take time to associate their passions with raising awareness of Parkinson’s and contributing funds to the cause.
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Fall & Winter 2013
Around the Region In Our Community Parkinson Society Central & Northern Ontario is proud to work with a number of support groups and chapters across our region, led by dedicated volunteers. From those who are newly diagnosed to those who have been dealing with PD for 20+ years; from south to Niagara, west to Guelph, east to Kingston, and north to Thunder Bay, there are friendly people who are on the same journey as you. As the year draws to a close, it is to the volunteers across the region who have helped to keep these groups going— and growing—that we wish to say THANK YOU for all that you do for your community. Below is a list, by location, of all the different chapters and support groups we currently have to offer. If your community is not on this list, and you are interested in helping to get a support group started in your area, our staff are willing to help support you and provide training for facilitators. Alliston - South Sim- Huntsville - North coe Muskoka/East Parry Sound Barrie Chapter Kingston Chapter Belleville-Quinte Chapter Kirkland Lake/ Swastika Belleville-Quinte Early Onset Manitoulin Island Bolton
Maple - Vaughan Support Group
Bracebridge - South Muskoka Markham Stouffville
St. Catherines Niagara Sudbury Thunder Bay Timmins Toronto - Carepartner Toronto - Downtown Toronto - Leaside
Toronto - Looking Midland - North SimAhead Together coe Brighton Toronto - Newly Milton Burlington Diagnosed Mississauga Burlington CarepartToronto - North Toner Group Napanee ronto Brampton
Cobourg - Northum- Newmarket berland Chapter North Bay Collingwood Oakville Etobicoke Chapter Orillia Guelph Peterborough Haliburton Young Onset Hamilton Hamilton/Halton Young Onset (Second Decade) Hamilton/Kitchener Young Onset
LiveWire
Sam Nassar has been volunteering with Parkinson Society Central & Northern Ontario (PSCNO) since January 2012. In his time with us, he has become an invaluable resource. He is a ‘Hope in Bloom’ Tulip Captain at several locations in Toronto, he volunteers at SuperWalk, and he comes into the office regularly to help out with mailings and other things. Sam is also our primary speaker with Healthpartners. Healthpartners is a partnership of 16 national health charities raising funds exclusively through workplace charitablegiving programs. They provide Canadians with the choice to direct their gifts towards improving the health of Canadians, through payroll deductions or cash donations. Donors can choose to direct their money to the health organization(s) of their choice. This year, we nominated Sam for the National Volunteer Award, and he was selected as the winner. The award was presented at the HealthPartners’ 25th Anniversary Celebration on October 3, 2013. In his role with Healthpartners, Sam goes out to National Government Offices and tells his personal story. He also talks about the benefits of being associated with PSCNO. The feedback we have received about Sam is very positive—there have been many tears shed as he discusses his brave struggle with PD. He is relied upon to take on last-minute talks, and the Provincial Coordinator of HealthPartners was personally involved in his nomination. Parkinson Society Central & Northern Ontario is blessed to have volunteers like Sam Nassar working with us.
Toronto - North York Toronto - PSP, MSA, CBD Carepartners Toronto - Second Decade West Parry Sound
Peterborough/ Kawartha Lakes Chapter
Whitby - Carepartners
Sault Ste. Marie
Whitby - Durham Region Chapter
Scarborough
2013 National Volunteer Award for Healthpartners
From Left to Right, Louise LeBlanc, PSCNO Coordinator of Volunteers, Cyndy Moffat Forsyth, Huntington Society of Canada (Chair of Healthpartners' Ontario Council), Sam Nassar, Kelly GrenierHealthpartners Provincial Campaign Coordinator, Ontario, and Eileen Dooley, National Executive Director of Healthpartners
Page 11
Fall & Winter 2013
Our Mission Parkinson Society Central & Northern Ontario works in partnership with Parkinson Society Canada and eight other regional partners across Canada to ease the burden and find a cure through support services, education, advocacy, and research. Parkinson Society CNO 4211 Yonge St. Ste 321 Toronto, ON M2P 2A9 www.parkinsoncno.ca 800-565-3000 or 416-227-1200 Charitable No: 10809 1786 RR0001 LiveWire is published three times annually: in the spring, summer, and fall. Expect our Spring edition in March, our Summer edition in August, and our Fall & Winter edition in November.
The LiveWire newsletter is published to provide helpful information to people affected by Parkinson’s in Central & Northern Ontario. It is not meant to provide medical advice; readers should contact their doctors in all matters relating to health concerns and/or medication. We welcome your feedback on current and past issues, as well as suggestions and submissions for future issues. lf you have a story, a poem, or an article that you would like to submit for editorial consideration, please email the editor at livewire.editorial@parkinson.ca. Next submission deadline is February 7, 2014. LiveWire is offered in both hardcopy and electronic form. If you are reading this copy and would like to be added to our mailing list, or if you would prefer to receive the electronic edition, please contact livewire.subscriptions@parkinson.ca to be added to our email notification list or call 800-565-3000 ext. 3372.
Parkinson Cut-a-thon Sunday April 13, 2014 Come celebrate our 25th anniversary.
For more information, contact Kimberley Murdoch, 416-227-3374 or kim.murdoch@parkinson.ca
Carepartners Join in education and discussion sessions from your home computer or a community location with funding provided by J.P. Bickell Foundation. Contact Karen Boyer, Community Development Coordinator, North District: 705-645-9513, home office in Bracebridge; 800565-3000 ext. 3317 or karen.boyer@parkinson.ca
Did you know? LiveWire is offered in both print and electronic forms. If you would prefer to receive the electronic edition, please contact livewire.subscriptions@parkinson.ca to be added to our email notification list.
LiveWire Parkinson Society Central & Northern Ontario 321 – 4211 Yonge St. Toronto, ON M2P 2A9
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